I'm a survivor: miracle baby Carly Jensen celebrates 40th birthday milestone

Indeed, such is her love of the monarchy she named her border collie William Arthur Philip Louis after the future king of England.

This bubbly woman from Glenellen giggles as she recounts falling rather madly in love with a picture of Prince William when she was about nine years old.

"I told Dad, 'I'm going to marry him one day'," she recalls.

"Dad told me, 'You won't be marrying him, you don't have blue blood'.

"Then what did he do but go and marry a commoner!"

There's many stories where that came from - including a sheepish confession that she absolutely "loves" television show Married at First Sight.

Carly is brimming with smiles and ready laughter as we sit down for a catch-up at Purple Chicken this week.

She's full of praise for the Albury cafe's hospitality program for young adults with disabilities, which she has been a part of since it began in 2019.

"When I started there, I couldn't even cut an onion," she declares.

Now she's queen of the Thermomix (she has her own at home), she's honed her customer service skills to an exceptional level and conquered a lot of her emotional anxiety.

On Thursday, March 23, this remarkable woman - who wasn't expected to live beyond her first few days of life - celebrates the miraculous milestone of her 40th birthday.

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When Carly was born, doctors weren't certain she'd survive.

Her tiny body was carrying a heart defect that was only the 28th known case worldwide and she was racked with a life-threatening but undiagnosed blood condition.

She endured 13 gruelling blood exchanges (a complicated procedure that involves removing all of the patient's blood and replacing it with donor blood) in her first 10 days of life - a process most babies might only survive twice.

When she was just five days old, doctors performed the first heart surgery, followed by a second major operation at six weeks.

Her mum Jenny still vividly recalls the surgeon telling her that for 1.5 hours of the four-hour operation, they struggled to get Carly's heart going on the operating table.

"I remember she had 29 lines going in and out of her," Jenny says.

"The surgeon said he'd stay the night to monitor her but warned there wasn't much he'd be able to do if there were complications."

That same surgeon would open her up again in ICU to drain the fluid from her heart while Jenny and dad Lindsay waited, worried and prayed in the corridor.

"It was 3.30am and we actually gave in and said we'll give her back to you, God," Jenny recalls.

"At 4.30am the surgeon came in and said she's still here; that at 3.30am she'd turned the corner."

It felt like a miracle to Jenny when she was finally able to take her baby home after 12 weeks in Melbourne.

There were many more complications, another major surgery at 20 weeks to repair a cranio-stenosis and at three-and-a-half years of age, a trip to the Mayo Clinic in the US to re-open and fix her head.

She was operated on by Ian Jackson (renowned as the "top plastic surgeon in the world") who would also re-operate on her cleft palate when she was 5 allowing her to talk properly, according to Jenny.

When Carly was 18 she returned to the US for a full facial reconstruction "to make her face the way God meant it to be".

"She came home looking like my mother!" Jenny states.

(In 2018, there was even a breakthrough cure for her hepatitis.)

Today, apart from managing her chronic eczema and the challenges of a mild intellectual disability, she's remarkably well, Jenny marvels.

But it has not been an easy road for this family, who own South Albury business Ag Boss.

Theirs is a journey beset by loss and heartbreak.

In 2010, the Jensens' eldest son Ricky succumbed to a rare form of leukaemia at the age of 24.

His death would prove the catalyst for Jenny's involvement in campaigning for better services for cancer patients (she chaired the Albury Wodonga Cancer Foundation for a number of years) and creating the care bags for cancer resource with Cristy Jacka.

Through the many trials and tribulations, Carly has remained a focal point for the family.

Jenny admits it's not always an "easy relationship" to be the mother, carer and advocate for a child with a disability.

The vagaries of the education system (Jenny removed Carly from primary school because of bullying and home-schooled her) and, more recently, the challenges of navigating an unwieldy NDIS can cause confusion and conflict for the pair.

But there's also a beautiful and unbreakable bond that's been forged in the fires of adversity.

Carly, who lives in her own flat 100 metres from the family home, will bring her mother a cup of tea in the morning before she catches the Regional Bus to town to attend Purple Chicken.

"That service has been amazing and has taken so much of the burden off me," Jenny explains.

"At home, Carly is responsible for her own meals, washing and keeping her flat clean; but she'll come up for dinner a few times a week."

Younger brothers Scott, 32, and Mark, 31, (who help run the family business) also play an integral role in Carly's life.

There's a bed made up at Scott and wife Emma's home and Carly is a favourite with their three sons.

Carly says she shares a particularly close bond with Mark, who joined the family on a recent trip to Israel as her support worker.

"He pushes me to be better," Carly says.

"In Israel there were these huge steps and we were half-way up and I was exhausted and he just knew the right way to say keep going."

Mark insists it's the other way around.

"Carly is incredibly inspiring," he says.

"She's very smart, much smarter than me in a lot of ways and, no matter where she's at, she never stops trying to develop herself.

"Life constantly throws her frustrations and I remember one time when she was asking, 'Why did this happen to me?' ... I remember it breaking my heart.

"But it was like from that point she just decided it is what it is and her attitude is a constant reminder of why we need to keep going forward no matter what life throws at us."

As for this "cheeky", "very funny" people person, her dreams for the future revolve around helping others.

"I'd like to work with kids at Belvoir Special School," she says.

You get the feeling that's exactly what she'll be doing in the next 40 years.

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